9-29-11 Part 2

This system is amazing!
The new facility is a combination of home life and rehab facility. There are separate "apartments" (more like condos) where the patient gets to spend their evenings and nights to re-acclimate them to a home atmosphere. I must admit I am impressed with the condos. They are almost what you would expect if you stayed in one on vacation, if not a bit more sparsely furnished.

There is still round the clock management (observation) by aides, who change shifts three times a day, and who work with Isaac to perform daily routine tasks. He goes by bus to the rehab facility (about 5 miles away) at 8:30 or so, works at the facility from 9-4, then returns to the apartment for the evening. This schedule, and the proximity of the apartments to Michaels, should allow Jackie the flexibility to move to a schedule that would allow her to work during the day.

The apartment has a full kitchen, dining table, and small living room. It is more like a two bedroom assisted living, with intercoms and cameras in the common areas. Very impressive.

All the units are linked like a little community, fenced, and gated.

We met in the commons area of the apartments, where there are activities on a daily basis. They also watch movies and have social time.  They had provisions for ordering out for dinner for new patients, so we had Dickey's BBQ, ate and laughed (our aide was not supposed to join in, but we usually include whoever is in the room), and Isaac was ready for bed. The nurse came in and gave him his nighttime seraquel, but he was already going to sleep, so I'm not sure we need it anymore. Still, it is the minimum dosage. 

The light show started outside, surprising all of us, and was upon us as the kids and I climbed into the truck for the drive home. It was gale force winds of 60mph, which made me glad I was in the truck. I put it in auto-4wd, and we had no problems getting home. The rain and winds were terrible, but the lightning was the best I have seen in my lifetime. Just incredible!

Here are some photos from a local news station:

 
 

9-29-11 Places to go, people to see

We received word yesterday that Isaac would be moving today. He asked about his buddy from across the street when they didn't come.

He worked on homework from his teacher. One was a sheet with matching words and phrases. It did not occur to me until after hearing this that we do not remember abstractness, just sights and sounds. Concepts are learned, and can be forgotten.

He had a box of words at the top of the page to put into the sentences below. He would read a sentence and would determine the right answer in his head. Although he was right with his answer, it was not one of the choices in the box of words, and therefore was not right. (black or white, no gray)

He also was down to the last two questions when he realized he had four words left in the box. He was upset because he thought he had done something wrong, since there were more words than blanks left to fill. He was not happy to learn that 2 words had been put in the box on purpose!

His printing is very good.....better than mine.

He has trouble getting the answers in the correct blank on the right of the page, even after putting the numbers of the questions next to the blank. Interesting.

Lastly, he asked mom yesterday when he was going back to Texas. After talking with him, he truly thought he was not in Texas because this area was so unfamiliar to him. (east Dallas)

Today is the day --- around 11am, we will say goodbye to OCH, our home of 20 days & move to CNS for the next phase. Thank you OCH staff for the amazing work with Isaac!!

Left OCH & arrived @ CNS to "check in". They made copies of orders, etc then told us to "grab lunch" & come back @ 1pm... So here we are inside Wendy's. So far, he's ok eating nuggets... Wow :-).

Wow. Forget BBQ sauce, when you have a shake! She said he sat successfully in a fast food place and had lunch, since they had to wait for admissions at CNS. He was not overly affected by the stimuli in the restaurant. Actually, she admitted she was more nervous than him. His only issue....

"I'm sorry to tell you this, but I uh didn't want BBQ sauce."

Instead, the above picture provides the answer to "why". He has come so far. Keep praying for the rest of it to come as well. The mind is the last thing to connect.
 

 

 

9-27-11 Day of Reckoning

Mom had the controls yesterday:

This morning he was bright-eyed & "ready to go" by 7:15. We took a shower "(mostly by himself - yeah!), dressed then sat to "inhale" breakfast. Therapy was off and on from 8:30 - 11am. During this time I was able to run an errand :-). He now has a break until 2pm, when he'll have school until 3pm. Today included music therapy (playing piano) & the instructor felt he did much better than previously. Off to the weekly "care conference" to discuss status and go-forward plans. Great work prayer warriors, Great work God!

Care Conference over -- Good news/Bad News. Good: Transfer to CNS could happen as early as TOMORROW! Bad: The brain injury means that he won't be able to participate in some of the activities he's used to, OR they will be difficult for him. Explaining this will be difficult for all parties involved. :-( BUT -- we have our son, alive and doing better than anyone expected, so that is a huge praise!

I'm telling you, here and now, that God is greater than any man. If God says he will recover and play soccer, then he will recover and play soccer. I'm praying for God to tell me what will happen, and I have given him that issue to deal with. I feel like He has called me to action to find out how to help recover reaction times and processing speeds. I wasn't like this yesterday, because I was focused only on how Isaac was doing, but I feel empowered to put my geek skills to good use in research. Weird!

Another child sick:

Brea went to the doctor yesterday and was referred to Children's for further tests. She has an ultrasound scheduled for Friday, and if the doctor is right will have day surgery in two weeks. She and I went down after the appointment, since we were 3/4 the way to OCH, to see Isaac and Mom. Isaac was eating dinner. Mom and I took him downstairs to make "paper bag pumpkins" (interesting craft) while Brea rested upstairs. After craft time was over, and we were back in the room, it was time for Brea and I to get home. I dropped her off and went back to the office to do some of the work I had missed in the afternoon. Mom came home after Isaac went to sleep, beating my arrival at 10:15 or so.

9-26-11 (Monday) New beginnings

The  morning went well today. I heard about it as I got to work. Mom is staying with him again, so I have to give shorter updates. :)

Today Isaac is assessed by the team from CNS Irving. Please pray for his good mood and ability to show them his speech and cognitive skills. This transfer is the next step before coming home. Thanks!

Assessment went well. He was a little "quiet" (slow to respond & in quiet voice) but did answer most questions. Even recited the months backwards when asked! Can transfer as soon as dr here clears & CNS has approval from insurance. Yeah God! Yeah, Isaac!

Me: "Isaac, what are you watching?".
Isaac: "TV"- as he points to the screen.
Me: "I know - but what are they showing?"
Isaac: "commercial"..."and another commercial".
Yep - that's our Isaac - stating the obvious!! :-)

I made it to OCH late last night, after finding as many traffic jams as I could on the way. (not!)
Anyway, since I was late I decided to restock the mini-pantry (Yes, Laura, we are STILL using it!) on the nightstand with cookies, chips, and more Dr. Pepper. This is actually more for the parents than Isaac, but that's ok. 

Isaac was up and moving about the room. Jackie told me he was now going to get PRN seraquel for the afternoon, and if that worked PRN for the morning as well. I think it is a good idea to keep with the night dose for now. Regardless, we are at the minimum dosage. The goal is to wean him off the drug by the time he transfers to CNS. 


I have to remind him to "use your voice" when he speaks sometimes, because it comes out in whispers. He is saying the words, just no voice to them, and has to remember people have to be able to hear what he is saying. 


He has that little boyish charm again; the one who wants everyone to be happy. I'm sure Jackie is probably more keen to whether that is part of his character just prior to this incident. I keep wondering if it is "age appropriate" or is a small sign that we are still behind somewhat. 


Isaac can do the work of a 5th grader, but can read the words of a 7th grader. His memory and vocabulary are improving on a daily basis. 


My hopes are to see how well his coordination and demonstrative thought processes improve without the seraquel. If this drug is what has been causing him to be "slow", which is typically by design, then we should be able to start practicing soccer a little more intense than before. He likes it, and he is naturally good at it. This should help us moving forward, since we could eventually get him to some of the team practices to start desensitizing him to larger numbers of people. (he knows the team players, the coaches, and the parents so should be able to tolerate them well)

 

Progress Report....

A video is worth  more than a thousand words...

Translation: Hi, everyone! Have a good day! Bye!

9-24 and 25 - The weekend of goodness

I have been seeing a steady increase in Isaac's abilities over the week, and documenting them here. Mom, however, has only seen him when he gets tired in the evening. His interactions are not great at that point, and his tiredness shows through more.


Mom took the early shift over the weekend to allow me time to run a 5K race and play in our adult coed soccer game, and to sleep in Sunday morning to ward off the soreness. She was able to see the bright and shiny Isaac in the morning, and how he was more the boy we know than any other time during the day. 


Saturday -

Ok, so I've been here a while :-). With Isaac, waking up and now eating breakfast!

What a difference a week makes! Sentences, much clearer sounds and personality. :-). So much progress in a week! God is so good!

Today was fun -- held 3-4 sentence conversations w/Isaac, put together Legos, went for walks, discussed food & he asked about how long he's been away from Huffines & when he can go back. Yeah!!

A conversation from early today with mom:
      Isaac: "So, I've been out of school 3 or 4 weeks?"
      Mom: "3 weeks."
      Isaac: "So how am I going to make that up?"
      Mom: "How do you think?"
      Isaac: "By working."

 Jesse and dad came up this evening and watched Finding Nemo with him. He was alert and responsive well into the evening. In fact, it took until about 9:45 for him to finally go to sleep tonight. (Gotta watch the end of the movie, ya' know)

Sunday -

Came in this morning & Isaac was already awake and eating breakfast. Asked "where did you go?" I told him, & he replied "ok, cool". Love this boy & the progress he's making!

Dad brought Brea today. We also brought his favorite chair and a soccer field chair to give us more seating. Bubbie and grandad came to see him, and so did the nurse from his school. He went for a walk outside in the late afternoon, then came back for dinner. He was alert and talking to me and the nurse, but I could see he was starting to get tired. I sent mom and Brea on home since Brea has school and mom has to leave early to get back here tomorrow morning.

Tomorrow is the big day we are evaluated for transition to CNS. Pray we have a great day, and he is able to show them his abilities as well as gaps. 

 

9-23-11 Good news!

We spoke with the Director of Admission at CNS. After a couple conversations, we are MOVING TO NEURO rehab near Jackie's office in Irving. They have discussed it with our insurance, and will now assess him to determine the services he needs on Monday. He could transfer as soon as this next week.

That means our round trip will be shorter, and Jackie or I can go to work in the daytime. It is designed to get him used to a working day (school day for him), then he will transition to outpatient services, and finally to home.

One more step!

9-23-11 (Friday) When do we go home?

That was the question this morning. More appropriately, it was "how long before we go home?"
He is starting to become aware that this is not a permanent place, and that he is here temporarily. I have not worked on it with him because he was not showing the ability to retain that information yet.

He woke up as I opened the curtains and removed the enclosure. He talked to me this morning, like the other days this week, and we turned on the TV to watch Jodi Dean and the Morning Show on channel 6. I moved his helicopter to put his breakfast tray over on his table. He started to eat his breakfast, then noticed the helicopter again. "Thanks for putting it together with me yesterday." (One more step forward)

We chilled after breakfast, then showered and got ready for school time. He did the showering with minimal help from me. Man, that water takes so long to get warm. He looked up at me with bright eyes while we were waiting for it to heat up and said, "Can we have some music?" ---The background story is the boys bring their iPods, put them on the cabinet and listen to them while they are in the shower. He remembered that!

The Speech Therapist came in and asked him about hand-made, stuffed soccer player he made. He told her yesterday that it looked like a character in a video game he likes on his iPhone. She tried to get him to recall, but he was trying to tell her he had seen them in the "claw game" at Wal-Mart, or something similar.
(Another step....see why I like mornings??)

It was shortly afterwards that he asked me about leaving.

Then he brushed his teeth and finished just in time to get to class today.

9-22-11 - I love mornings

Mornings are great!
I got here at 6:30, and Isaac woke up at 6:40 this morning. We talked a little while I opened the curtains and got the room prepared for the morning, then sat on his bed. I leaned back on the end of the enclosure, and he snuggled up on my shoulder. We decided to snooze for 15 mins or so, then got up and started getting ready.

Breakfast came and he ate everything that was not nailed down. He got dressed and his therapies were back to back. In hindsight, it appears we maybe should not do that. OT brought him back up early and reported he refused to cooperate....even with the iPad. She apologized to him if she did anything wrong, and we shut the door. He was glassy eyed and not responding well.

I talked to him for a few minutes, and he was able to tell me that his brain shut off and he didn't know what to do. He also was thinking about choking. (It was hard, , but I kept my composure) We talked about how it was good that he could communicate that his brain shut off, and that he was safe from the choking. It wouldn't happen anymore.

I was thankful that our Neuro came in at that time, because we were able to communicate the same physical cues to her and she was able to explain why he felt that way. Wow, does she have a way with children. Definitely her calling. I later found out she is a former missionary. Can you say "God thing"??? I'm still listening, Lord, I promise!

Anyway, we now know to say "my brain is tired" when we get too overloaded. It may take some time to get it all out, but the other therapists have been informed so they know what to do.

We played bingo with the Neuro until she had to leave, then wanted to play on our phone.

I put up his safety nets and went to get some lunch. On my way back in I brought him the lego present. He perked up when he saw the box, so I carefully opened the box (so we could close it again) and put them on the tray. Soon he had all the legos arranged and was starting to build the image on the box.

As we put together the helicopter, I noticed his attention span was minimal. Then, when he tried to pick up pieces that were just images on the instruction booklet, I began to get worried. I noticed a pill cup near him, and after taking it to the nurse to identify, learned he had not taken his Ritalin at 1. It was now 4, so it was not a good idea, but it did explain the difference in his ability to focus. (I was not prepared for the difference)

He and I went down for family dinner night, and we prepared on the way for the people filling up the room. I strategically put him at the end of the long boardroom table, with mom and I on either side, to help him be slightly isolated in case he needed space. With one slight episode of looking down to put himself back together, he did great.

He went to sleep about 8 tonight, so I expect he will be up early again in the morning.

9-12-11 Go Fish!

The Neuro doc came in and wanted to work in his room today. She had Go Fish with her, so dad helped Isaac hold his cards (HUGE) while they played. Ok, dad "consulted" on the game, helping Isaac play so the doc didn't have to pretend not to know what he had. lol

The game progressed, and I could see some of the issues he currently has with tasks. He did very well organizing the cards. He thought the number 9 was "bowl", but after correction he started using the proper term. Staying on task was difficult, and remembering the phrases

He DID win, though!

Later his older brother Chris, who drove up from Austin with his 3yo daughter yesterday, met Jackie at the facility. He was able to see Isaac's interaction level and take comfort in his progression. We ordered in, ate and watched the umpteen-millionth episode of the NCIS marathon. Child Life checked out a Wii for his room, and he got to play Mario (a 3D version).  I'm not sure if he was doing any good, but he was having fun with it.

9-12-11 (Wednesday) Who is this child?

Isaac went to sleep early last night. He had not taken a nap all day, so naturally was tired. We got his pill early, at 8:30, and by 9 he was out.

Dad arrived at 6:30 this morning in case Isaac's early bedtime caused him to get up early.

He was still working on dreams, but about 7:15 he started getting up. Dad opened the curtains, the blinds, unzipped the safety enclosure, then turn on the lights in the room. The nurse came in with his pill, and the tech with his breakfast. He got up and was very cognizant, talking in full words and sound. He decided on cereal, so opened the box AND the package inside. Pouring was a little difficult, but he finally got it to work.
I'm seeing more of the child I know, then seeing the slight limitations that are left to conquer. I asked him if he wanted to get his clothes and get dressed. He got his shirt and shorts, and I reminded him where the underwear and socks were. Then he lost focus on the task, and sat back in the bed watching TV.

"Are you going to get dressed?" I asked.
"Oh yeah", he said, realizing that he had forgotten.

Dad helped him stay focused, finish our cereal and milk, then got him interested in the Popular Mechanics magazine.

The nurse practitioner came in and spoke with him. We were talking about legos, and Isaac told us how at WalMart they have the architecture section (of legos) and buildings to build and take apart. He likes that area. The nurse took it in stride, suggesting we talk to the OT or Child Life people about getting some of their Legos for the room.

After she left, Isaac read the cover out loud. He asked me about a Cobra picture that he couldn't remember the name of, and then showed me an advertisement comparing the storage capabilities of iPods, etc. He noticed that the iPhone4 had 16GB for $200 where the iPod had 8GB for $300.

"Less for more?" (That's my Isaac)

They say brain injury causes ADD/ADHD symptoms. Jackie and I discussed it last night, with me trying to be on the conservative side of the drug, but after that discussion and seeing him move from "all there" to "all there but distracted" this morning I'm becoming a bigger fan. We haven't had our Ritalin pill yet today though.

The day is pretty full, including an hour for a Vision Test to see if he lacks any peripheral or direct vision.

0900 - OT
0930 - School
1000 - Visual
1100 - Speech Therapy
1300 - NeuroPsych
1400 - School

I discussed it with our nurse. She said that the length of clarity I noticed in the morning should be getting longer as time progresses.

Later this morning he had a visit from a Vision Specialist. He passed with flying colors, and the only thing she noticed was a slight delay in movement to his lower left field of vision, but this will most likely pass as he works through rehab. 

Dad went to get Subway while Isaac was in Speech. Lunch was waiting for him when I returned, and he came back about 5 mins later. The tech told me he had to relay the "duck" story from the hallway, and the way he was laughing I have to assume Isaac did a pretty good job.

9-20-11 (Tuesday)

A little slow to get up this morning, but not cranky. He and I talked for a bit, then watched PBS while he ate breakfast. The remade ELECTRIC COMPANY!!!! YEA!!!!
One of the nurses showed up, and I swear she thinks he is deaf after his injury, because every time she spoke to him she was loud. Reminds me of people trying to speak to a non-english speaking person who mistakenly think more volume means better reception.

So, we showered, and Isaac was washing his hair pretty well. Dad helped. No arguments about showering, as one would normally expect from an 11 year old. He took off his clothes and dressed himself afterwards.

The docs are saying his progress is slow, but I'm seeing incredible progress. He just doesn't like to interact with some of his teachers, mostly male.

He still gets a little lost when walking and thinking at the same time.

Many cool things happened today:

• He started talking in short phrases where we could hear him. 
• He started putting together harder puzzles
• He read 5 web pages of 7th grade words to his teacher
• We took our clothes and started two washes downstairs
  The first time I took down the bag.
  The second he carried. 
• We came back to the room and watched Harry Potter. 
• He is trying to text. Simple words are there, but he is trying to conjure others with his hands on the keyboard and it is still a bit difficult.
• He responds to just about everyone who speaks to him.

9-19-11 Dog Night

Cousin Stephen came to visit a little after mom got here. Mom brought dad their dinner, and Isaac waited for everyone so that we could all eat together. Isaac finished dinner in time to go downstairs and see the rescue dogs, who came to be friendly with the residents here.
He realized as we turned the last corner that there were LOTS of people with the dogs, and so he stopped at the corner for fear of overload. One of the dogs decided to be friendly and brought its trainer, so we all moved around to the dining room where it was much quieter. The puppy was very nice (and BIG), but Isaac was still processing the overload. He interacted pretty well, however.

While we were sitting there, a silly sight came into view. An 11yo Dachshund was being pushed around in a stroller, perched on top of pillows (that had Princess written on the side). She was wearing a collar with a tiara charm on it. We all really liked her. Dad kept petting her, making her ears itch, and each time she shook her head her ears would slap. It was a funny sight and sound.

Stephen took Isaac back toward our room while mom and dad had a conversation with the person from CNS. I think he will like it there if they are the right one. We have to hear from PATE as well. Mom and dad went back upstairs afterward to find Isaac and Stephen in the hallway, discussing the Da Vinci drawings on the walls. Isaac was animatedly "talking" to us about the drawings. For the most part, we could understand. We laughed at the ducks (there is a story there) and other things. We then went into our room and started to wind down for bedtime.

9-19-11 (Monday) Bright eyed and bushy tailed

This week's posts will be updated throughout the day, since dad is sitting and is going to be bored.

What a difference a full night's sleep can make.I kept him from his evening nap and he slept all night.

Bright eyes and smiles as dad came in and woke us up. We are repeating words and phrases like a mockingbird, and they have "sound"! We dressed, had a breakfast of champions (french toast and Frosted Flakes), and discussed colors while eating. We recognized when we didn't know some colors, but found that if we hear them we will remember later. 

We played War with dad with our cards from the alien box. Got bored after a couple rounds, but then told dad we needed to go to the gym for OT. (Oh, we remember that!) We still had 30 minutes, but after I explained the schedule change the little toot went over to the schedule to "confirm" it was really at 8:30. LOL

Perfect timing. At the moment we were headed for the door, the nurse tech came in and had to make us wait for her to get vitals. She asked what we had for breakfast. We were apparently not interested in remembering that, so shrugged. We had to graduate to a bigger blood pressure cuff, since the little one was throwing high numbers. The larger one worked fine.


We got to the gym and waited on our OT person, who took us into a quieter room to work. Dad said he would go back upstairs, since my presence usually distracts him. 

Isaac came back with the PT man. He said they played soccer in the hallway, and that Isaac was physically ready for bigger and better things. Dr. Beard saw him in the room and asked about the morning. He seemed satisfied with Isaac's progress. and was interacting well with him. Took meds and watched dump.com videos with dad, laying on the guest bed. 

The NeuroPsych came in and discussed a suggestion of eventually moving him to PATE in Allen or CNS in Irving as a discharge strategy. Both are going to come introduce themselves as options, and give us an overview of their services. OCH is a medical rehab, where both of these are neural rehabs who can focus more on neuro and help him learn to cope with any behavior and coping issues. This will not happen overnight, but once we get the meds leveled out it will certainly be an option.


Seems someone mis-coded the OT twice on the schedule. Our tech verified that they only have him once during the day. Strange it was not caught before they posted it. He was sure he would get more time on the Wii or the iPad. (lol)


The neuro docs came and looked as if they liked what they saw and heard. We talked about the colors, and so tried to get Isaac to say "blue". He didn't peg it, but instead said "Azul". We all got that one!! Different language, but it means the same thing.


We set up the little computer and got Bejeweled Deluxe on it for Isaac. He seemed to think it was neat, but making it work was not conducive to his processing today. While we were working on it, our PT tech came back in and took him to NeuroPsych.

Mom did good for lunch. Isaac had pizza, applesauce, and chocolate milk. Isaac ate it well, but the after lunch blowout was not good. We rested, and our teacher is going to see us at 3 instead. We also have time for our afternoon Ritalin to take effect. 

It seems that divinity continues. After speaking with the representative of CNS on the phone, we have discovered that the facility is very close to where Jackie works. Moreso, the description seems to be the direction we wish to pursue for Isaac. We will know more after meeting with the Director tonight, then will meet with PATE Directors tomorrow at lunch.


====================
PATE - ??
CNS - Center for Neuro Studies 

9-18-11 (Sunday)

I arrived with Isaac still asleep, as predicted. I brought him some chocolate doughnut holes, which he ate all but a couple. Isaac got dressed, then dad set up the computer and helped get us back on Facebook. We learned pretty quickly how to scroll through the page and read what was going on.

Mom and Brea arrived.  We talked and played the morning, then decided to go for a walk. Dad found out that we could actually go outside the facility, just not off the property, so we went out the front door and around to the outpatient side of the building. We were thinking about how to get into the playgound when a cloudburst hit us. We took cover under the ambulance entrance, but could not get back into the building on that side. We waited out the rain, then went back around to the front and came back inside.

Another visit from soccer friends who came to the rescue armed with LUNCH! Thanks guys!!

We found a football game..... Manchester vs. Chelsea. (Sorry...Futbol)
Great game!!

Then the other game of the day came on.... Dallas Cowboy Football (American style)

Dad received a text from our nurse. Her daughter made Isaac a neat lego arrangement, so she sent me a pic with it.

During that, our favorite nurse and her husband brought long time friends to visit. More soccer playing, which was interrupted by a piano teacher who was supposed to have see us on Tuesday, but decided that unannounced on Sunday was perfectly fine. Despite the decision, Isaac had a good time with his first piano lesson. We had more conversation with our friends afterwards before they needed to go on to visit another friend in the hospital. Please add this man to your prayers. He had a heart transplant and it is going bad. He will need another soon.

Mom and Brea left to run some errands before going home. We went back to the room and rested.

A friend from school came, with his mom, and brought us the gum we like and a really neat tshirt. Isaac was getting pretty tired, but he thanked him for the shirt. I heard him say later it was neat.

Our Margaret, Shaun, and Connie came. He perked up at the sight of more familiar faces, but could still tell he was not faring well at that point. We joked for a bit and they then left to visit Baylor to see "the babies". Margaret was showing the kids where she was born.

A big storm came through. Lightning everywhere. We got dressed for bed, then crashed. The nurse and dad had to tickle him awake to get him to take his pill. He then went back to sleep, but little things are waking him up. We will see but this may not be a good night tonight.

9-17-11 (Saturday)

This is late because yesterday was a crazy day that didn't end until 11pm.

Dad and the teenagers were already obligated with the RaceForTheChildren.com 5K race in one form or another. Dad and Jesse ran in it, and Brea helped work the registration. Dad shaved 25% off his time from last year, and Jesse took second place in his division.

Isaac had OT in the morning, then worked on matching skills. Later he had a visit by two soccer teammates. They played soccer in the room, listened to the ipod, sang songs and generally acted like preteen boys. Grandpa Mike brought Grandma Eileen and kept the festivities going.

Mom stayed with Isaac until the afternoon. She had arranged for a sitter to allow both of us to attend "Parent night", a special band function, for Brea since this is her Senior year. The sitter stayed until Isaac went to sleep (after his nighttime medication), and I returned this morning before he woke up. He is directly across from the nurses station, and still has his enclosure so he could not get hurt.


- Posted partly using BlogPress mobile.

9-16-11 (Friday) PRAISE - Get ready for goosebumps

I have always said I have a legion of angels watching over me, with the many times I have "near missed" issues in life. Isaac apparently has many legions, and the latest only attests to that.

As the last day of insurance coverage arrived, we were wondering if they would approve more time for him to be 24/7 at OCH. He is still getting major help, still not out of the impulsive stage, still not verbal (greatly), and still a risk at night if he decides to get up when everyone else is asleep.

Our OCH case worker placed a call to the insurance company to speak with the insurance case worker personally. He and the insurance respondent discovered they grew up two blocks from each other, are about the same age, have the same friends and many memories. Needless to say, Grace brought them together with a common bond, and through their concerted efforts we now have TWO MORE WEEKS of time to recuperate at the facility, if necessary!!!!

He slept well and even joked around this morning about taking his medicine with the nurse. He's now eating bacon and frosted flakes. (for breakfast) Trying to keep him on task since he has OT at 8:30

He finished the eggs, bacon, and cereal.... We then washed up, dressed, brushed teeth, deodorized, and brushed hair. We then spent time with mommy before Jason came for us. 

His demeanor.... is much more "Isaac-like". He joked around with the nurse, and speech was clearer, too. He was also wanting to do stuff "myself".

Today we lost our favorite OT, who finished and is now going back to school. He spent 45 minutes in Isaac's room, after the session, and didn't want to leave.

Dad, Brea, and Jesse weathered the rain, and for part of the way no wipers, to bring Isaac and mom some dinner since theirs was not something they enjoyed. We stayed and watched Spy Kids before having to leave.  

 

Rumors MUST be contained!

There are rumors starting at the schools that this....."was a deliberate act". (which I won't describe to keep it nice)

If you are a student reading this blog, be very verbal in telling the ones who spread it that those are lies. This was, from what I saw (and I was there) and from my discussions with professionals from law enforcement to psychiatry, this was SIMPLY AN ACCIDENT. It could not have been anything else!

If you are a parent, or a person in charge of children, and you hear them discussing anything to the contrary, please direct them to their school counselor or repeat the above to them.

There is NO REASON this should be misconstrued as anything but an accident, and it would not be fair to Isaac to create fabrications for him to deal with when he returns to school.

I now will put away my soapbox and return you to your regularly scheduled channel.

9-15-11 (Thursday) First Day of (OCH) School

We were initially approved for 1wk here, and that ends tomorrow. Prayers for today - insurance will approve another week at minimum... & for continued progress with Isaacs behavior & speech.

 This is not a very good day for the family. We could use some pep. We are all having the attack of sanity check, and our minds are starting to give us grief.

OT had Isaac first and he stayed in the gym the whole time playing Wii and some other things. PT came to get him and were shocked he was in the gym.  They kept him there and now he is with Speech. 

So far pretty good. He is using his voice more today. He was "mad" this morning  and the doctors let him "be mad for 10 minutes." We watched the clock, and once this was up he was much better. 

The reduction in Seraquil really helped him wake up better. 

Very good therapy sessions. Speech focused on reading and completing sentences and then  identifying opposites. She said he did really well and knew the opposite before seeing the choices.

Jesse and Dad came to visit. Isaac was very difficult to respond. Seems like he was not "all there", but when he had moments of laughter or interaction he was better. Mom said she had to feed him, since he wasn't even attempting to eat. One thought was he was on too much of the Ritalin. 

Our closest friend came to visit us with his mom. Isaac played bashful, and was not wanting to look at him, so Dad suggested "the boys" go down to the Teen Room. We got a nurse to unlock the door, and just chilled in there watching TV. Isaac was better on the way, but mellowed in the room a bit. Before long his head was back down on his hands, and he was not wanting to interact. The second thought was that he was depressed and bored. I still think it was a little of both.

They lowered his Seraquil in half tonight so he will sleep all night and are watching him tomorrow as well. Think it might be a reaction to the medicine combination, but too early to really tell.

Please pray for Isaac's spirit. They aren't sure if it's a reaction to meds, or if he's getting sick, or if he's bored/sad, or combo of all, but he was more lethargic and not "himself" at all today. :-(

 I repeated my question about whether I could have damaged his heart, and if they will do a test to determine that at some point in time.

9-14-11 (Wednesday) - Ritalin to aid Recovery

There is a "magic pill" (pun intended) for rehab that will jump-start the rehab process. It seems the ADHD drug Ritalin is used, in low doses, to assist in focusing the patient and preventing the residual impulsiveness syndrome that most go through. Although the impulsivity goes away over time, enhanced focus allows the mind to start rehabilitating faster. To properly administer this, they need a baseline, which is why they have not started him on it until this morning.

I have also learned that other patients who have brain injuries (even adults) contract a mild form of ADHD from their injuries, and that this drug is very helpful in their recovery.

We understand it is NOT LONG TERM, but a catalyst to get him further down the recovery road quicker.

From last night:

Those prayers worked. The afternoon went very well! Excelled matching during OT, NP, and better word work in speech. Had some visitors tonight and Isaac even sang a song! Less stressed going to bed. Day starts early tomorrow with new med @ 7a followed by another OT at 8am. Night all you prayer warriors.

From this morning:

Jason with OT made him brush his teeth and put deodorant on by himself. (!) He did a good job with these & even completed tying his shoes! Not happy, though, with a 2nd pill in the am :-(. Currently in PT -- hoping it goes well. 

From this afternoon:

Ritalin makes him mellow and "whisper", but does seem to help him during the day. Just came from "craft time" where he tolerated others and music playing, and painted (brush and fingers, and even mixed colors). Now to room to rest before dinner.

Dad and Brea came tonight with Josh, bringing him a chocolate shake. (Yum!) From our perspective, he seems to be fighting to produce a demonstrated action. My thought is that he got too much Ritalin, and that they should halve it. The nurse asked us to give it 24 hours to balance into his system to determine whether or not this is just a symptom of getting on the drug. He was still laughing, but seemed to go back to a slightly catatonic state when not being engaged. The positive side was he swallowed his pill rather than chewing it.

9-13-11 (Tuesday) - Rehab, Day 2

(Red lettered phrases are copies of posts from FaceBook, archived here for those who do not have the opportunity to view it there)

Seems our "meet no strangers" child has developed a hesitancy with people he meets for the first time. We feel for the therapists, who change during the weekend.

He slept for nearly 11 hours, which is good as he has a full day. They changed his rehab schedule, since PT was so stressful yesterday, to Music Therapy at 9. Hospital timing is not the same as working people. Many times there are delays. Unfortunately, when patients are used to promptness, delays are many times irritating.

Music Therapy did not start at 9 like it was supposed to.

Well, day not starting off well at all. Had him up & ready to go to Music, only they next showed :-(. We rested & were visited by other dr.s. Unfortunately, the rest relaxed us too much so that PT was only a series o walks - too tired/belligerent to do anything. Now in room resting more until lunch. I will be discussing the "no show" during the care conference!

Music therapist is a volunteer so they're not sure why it was a no-show. They do agree that this caused the downward spiral so far today -- not being on set schedule. We'll see how the rest of the day goes...

Today we have Music Therapy, PT, Care Team Meeting (with Mom), lunch, Neuro Psych, OT, then speech. I would like to suggest they do speech in the morning, before he is inundated with physical activity. That way we can maximize his ability to communicate. Passed that to Mom for the Care Team meeting.

The word is spreading. Seems the general Middle School story is that he collapsed and is still in the hospital. Close enough for "age appropriateness".

The decision team met today, and agrees that he is still too impulsive. He is still not fully cognizant, nor has clear enunciation in his speech, so is a risk for injury to self and frustration during communication. There are certain sounds that cause him to verbally stutter, and certain motions that cause him to physically stutter.

His therapies spiraled in the early afternoon because the music therapy person did not show up. Although a volunteer, it would have been appreciated to know she wasn't coming so we could set Isaac's expectations. Speech therapy, however, went very well.

Those prayers worked. The afternoon went very well! Excelled matching during OT, NP and better word work in speech. Had some visitors tonight and Isaac even sang a song! Less stressed going to bed. Day starts early tomorrow with new med @ 7a followed by another OT at 8am. Night all you prayer warriors!!

The Neuro team came in and were very surprised at his progress, and his ability to read some of his magazine to them. John and Barbara came to visit, and Isaac sang Happy Birthday to him.

Dad and Brea came in the evening. He is clearer than before, and seems to be retaining some things now. His oldest brother, Christopher, called and talked to him over the phone. Dad helped get him ready for bed, then took Brea and went back home.

The new push for prayer should probably include the insurance company and travel. I am determined to be there every day, but it is physically taxing. We were warned today that insurance does not like to continue 24/7 inpatient when the patient can walk, but he is still a danger to himself if left at all, and his impulsiveness has not been managed. That concerns us and the doctors, so we are all fighting the battle before it happens.

9-12-11 Captains log: Supplemental

(Red lettered phrases are copies of posts from FaceBook, archived here for those who do not have the opportunity to view it there) 

Logistics
Mom has been with Isaac since the beginning. She is burning through her vacation time, at the present. She has already set up her FMLA (family medical leave act) to retain her job in the long term. In an effort to minimize the impact, I have set up to be off next week so she can get back to work.

I will use a week of my vacation, or hopefully I can use "hardship leave" (they still have to approve) to save my vacation time. This way we can "tag team" weeks with Isaac so that we don't get too burned out sitting. We can try to minimize the impact to our vacation this way.

My HR said I can receive donations of personal days to be used, but I believe I have to exhaust all my other accrued time prior to having that eligibility.

I also hope we can schedule others to sit one or two nights a week to try and lessen the impact of us being away from the other two.


School and Learning
Isaac is starting to recognize words and phrases consciously. As this gets better, we will want to get him back to working on school work. To this end, we have found that the OCH facility needs us to withdraw him from LISD and register him with the hospital program. This will negate his absences, reduce the load on the middle school, and allow the hospital to assist him in ramping up his schoolwork as he gets better.

The hospital program will be able to assess him for any adaptations, and work with LISD to provide them once he returns to school.

9-12-11 (Monday) First real day of Rehab

(Red lettered phrases are copies of posts from FaceBook, archived here for those who do not have the opportunity to view it there) 

As one would expect, Isaac is not caring much for the increased schedule. His frustration manifests into the phrase "S/He/ is trying to hurt me" when he has had enough and cannot communicate that he needs a quiet place.

1st day of real therapy. Liked PT until they started back to the room. Guess he wanted to stay, since he pitched such a fit. More PT in a few minutes, small break, OT, then speech. Afternoon time he can rest

He is not liking the therapy too much. PT is not letting him do what he wants to do, so "they're hurting me." Speech therapy went decently. OT played soccer, with no fits at all.Neuro Psych took a bit to warm up, but got better. Seems PT got the bad end of the stick today.

Dad and Jesse came this evening with a present for mom and stayed until Isaac fell asleep. He met them at the front door, as he and mom were looking out the window for them when they drove up. He is giving hugs more frequently, and gave mom a kiss. (that requires coordination of the lips and mouth, in case you haven't thought about it for awhile....:)

Jesse crawled up into his bed with him and watched the football game as he fell asleep.

9-11-11 (Sunday) - Just Chillin'

(Red lettered phrases are copies of posts from FaceBook, archived here for those who do not have the opportunity to view it there) 

Today was just a day to chill. We just lay in bed and let the world turn as it wanted.

Visitors included Barbara and Soccer friends (who gave us a Texas Rangers soccer ball....very neat!).
Dad, Aunt 'Chele, Brea, and Josh came with lunch for mom.
Bill and Bridget came to see us this evening.

Boy, learning to shower again sure is tough, but we are getting more of the hang of it.

Showing more of our personality now, although acting on multiple commands is still elusive. We are less impulsive, but still have definite issues with it.

Mom posted:

Prety good day actually. Loets of his "entertainer" personality showing through. Good to see friends & family. Tomorrow starts the hard work of therapy sessions.

Special thanks to Aunt 'Chele for letting Dad take Mom home for a night of some "away time".

9-10-11 Saturday, first day of rehab

 Showing off my Aunt 'Chele kiss.

(Red lettered phrases are copies of posts from FaceBook, archived here for those who do not have the opportunity to view it there)

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We start our therapy today.  We actually have a schedule. I'm glad that he was calm and slept well last night, because today is going to be very overwhelming.

We start the day off at 10 with OT, 10:30 with PT, and 11:30 for Speech Evaluation.

============
Mom arrived with fresh clothes and (more especially) shoes and socks. He dressed himself and then put his shoes on. He had slipped one on already tied, but the other was untied. He got the first 'over and under' before he started thinking about it and got stuck.

Isaac's eaten & clothes are changed (he even put on his shoes and tried to tie them!). Now we are patiently waiting for OT to begin (@10am).

Breakfast came and Isaac ate 3/4 of it. He used the fork for the sausage, but preferred to use his fingers to eat the fruit loops one at a time.

OT came and walked us down to the gym. She started working with him on an iPad, which is something he likes. They played for about 30 minutes, then the PT came in and started working with him. She took him walking, while mom and I returned to the room. We heard him coming down the hall first. He was irritated, and we learned that when he returned to the gym and couldn't see us he got scared. It took him awhile to calm down, then lunch came.

BBQ (yum!) . Mom made him a sandwich out of the roll and the meat.

The Speech therapist came in about the time we were done with lunch. He started to get irritated until I told him that she was not going to move or touch him, but teach him how to talk. He then loosened back up and worked with her for a bit before getting lost again. He was really worked up over today, and even gave mom an issue going to the bathroom.

The Speech Therapist said this is common, and that it would reduce over time. It's good to hear confirmation.

He is now napping.

After nap we decided to explore the building. It is not very big, but we were invited to a craft time. Unfortunately, craft time is too busy with sights and sounds (other, smaller children and music) that we had almost instant overload. We opted for the end of the hallway instead where there was a bench to sit on, and less noise.

We then went through the din and out the back door for some sun, where we found a basketball and 5 ft hoop. Unfortunately we couldn't get the shots to get anywhere near the rim....and frustrated again, so we went out in the grass and sat on a bench for about 10 mins to cool off. Coming back, we found that we were locked out, so had to buzz the nurse to come let us in.

Mom thought we were needing the bathroom when we really were trying to get away from the noise, frustration, and overload. Dad held us in the bathroom and let us calm down, then took us upstairs to the teen area where we could chill on the low teen couch (Dad did) or lounge on the loooooong bench with pillows (Isaac did). Mom joined us and sat with Isaac while we watched TV.

Later, back in our room, we were visited by friends. One, who is active duty Army, gave us her coin (with a St. Christopher) and necklace (with a Wounded Warrior dogtag) she wore in Iraq. We kept fascinated by those the rest of the evening.

Ann and Stephen came to see us. Stephen was definitely remembered fondly. It was the first time Isaac saw someone and got out of bed to give them a hug. He met Stephen halfway across the room. While they were there, sister Brea and Aunt Michele came in with gifts from all over.

Dad's note: I thought I needed a truck to "move out" of Children's. I think I will need it again to come away from OCH. Oh, and by the way, whoever delivered the chicken with corn and green beans.... I want lessons from you!! That was AMAZING!!! (You know who you are, and thank you very much!!!)

Mom reported at the end of the day:

Good day -- only 1 fit due to us not being in the room like he thought. Better eating skills, better interaction, and more resting. Still long way to go, but hopeful he will fully recover. God is working mighty miracles - Thank you, prayer warriors!

Everyone but mom and Isaac left at 8:30, and mom reported that Isaac was definitely difficult to get to take his medicine. Isaac got a 'chele kiss.

9-9-11 Captain's Log: Supplemental

(Red lettered phrases are copies of posts from FaceBook, archived here for those who do not have the opportunity to view it there) 

 So I think Isaac thought he was leaving Children's to go home... He is not liking it here - except for the tv. Extreme frustration and anger about being in "another hospital"... Prayers for patience and peace for him, please.

Thank you to all of the visitors & well-wishers we had while @ Children's. It was great seeing how much this boy is loved & his face light up in recognition. We are now @ OCH where visiting is best from 6-8pm M-F & 9a-8p Sat/Sun. Call/text beforehand, please, so as not to over-stress his healing brain.

After meeting with the child psychiatrist, I feel better. She listened to us and asked what we thought was most important. We agreed verbal must come first so we can then determine the best way to help. She reconfirmed that they intend to redo the MRI, as they also believe the first one was too early.

The most promising thing, however, was when the Pediatrician was talking to us and explained the phase he is in. In most cases like this, many individuals go through a phase where they are restless and frustrated. He said, "there is a period that is entered where they are uncomfortable and there is no reason. They are not thinking logically, and cannot be reasoned with. Redirection is the only recourse, and should be used instead of trying to reason with them."

When asked how long he might be in this, the doctor said it was really up to him but that it could be a couple weeks. He described the things that Isaac is doing pretty much to a tee.

He did say this is part of the "coming out" period indicating healing, but set our expectations that this is not quick and it is the most stressful part for us. Oh boy!

Mom went home for a night. I warned her NOT to worry about the house, but to take a long hot shower and sleep.

Isaac and I had a great night. We took the dinner lid and used it like a popcorn bowl. We filled it with some Ritz Bitz minis and Chicken Bisquet crackers and watched TV. He actually fell asleep before they came with the pill at 9, but we sat up and took it anyway.

9-9-11 (Friday)

I had made a deal with Isaac, that if he would try not to get upset at my leaving last night I would try to get there early. Mom reported that it was difficult, but they were able to redirect him well, and after I left the nurse played slow motion fighting with him.

Woke up better with the reduced medicine. French toast dips for breakfast, and our wonderful friend Christine popped in to see how we were doing. Got dressed and headed to the Aikman zone while dad loaded the truck.

The transport, as in all things medical, was late. We got to play monster trucks on the Wii, and mom got a video of us shooting pool.

Transport arrived and we rode in our chariot to the Our Children's house at Baylor. Dad took the scenic route with the truck.

He waved to a motorcyclist following them while on the way in the transport. They put him in a temporary room, while they assembled a safety bed for him to go in his actual room.

We saw the rehab doctors, and they were very nice. They asked some questions we had already answered, but they listened to us describe the reactions and interactions (or lack of proper) for OT.

They did their testing, then left. He covered his head for some isolation. He is already worked up, but we have more to go today.

The nurse came in for her initial interview, then speech, then OT. Finally got lunch at 1:30. I think he was ready to give it up then.

Dad went for lunch and found the In-n-Out burger. He brought back a burger and a chocolate shake as a surprise. We liked our shake, and ate half of the burger, although we already ate half of the hospital burger they brought him.

Child life came and invited us to come down and paint, but we were told our permanent room would be ready in ten minutes. We decided to wait.

9-8-11 (Thursday)

(Red lettered phrases are copies of posts from FaceBook, archived here for those who do not have the opportunity to view it there) 

(Dad) I tried to go into work yesterday. It was familiar, and I was able to knock out some problems, but come lunchtime I felt like a train wreck with a headache. I decided it was time to go home with half a day accomplished.

Today was more of the same. I felt fuzzy and disconnected toward lunchtime.  Jackie had a rough time with the staff, and with Isaac this morning. Apparently he had too much of a drug that is supposed to level out his mood swings, and it took an hour to wake a child that normally takes 5-10 minutes.

Then he was a bear, which means he is still fighting through the fog.

Jackie posted:

Not sure I like him being on the Seriquil (?)... Knocks him out but when he awakens he is obstinate & stubborn. Strange b/c it was to reduce his anger/frustration, yet seems to be making him worse, esp. In his communication. (sigh)...

Yesterday we had to give him a pill with applesauce, which didn't fool him for a second, but he ended up taking it. Today, according to Jackie, he was grasping the pill and taking it. Funny, he never liked taking pills at home!

By noon she was running out of patience, both with the sudden absence of a sitter (we were documented to have one because of his aggression and impulsiveness) and due to Isaac's behavior. I was running logistics at home with a college student who had a flat tire and needed to get to class. This was not helping my fuzziness at all, and Jesse asked me what was wrong on the way to the class.I told him I was just focusing really, really hard. That was about as close to it as I could verbalize.

I dropped him off and headed to the hospital to rescue my wife. Little did I know that lunchtime traffic was not conducive to rushing anywhere, regardless of your reasoning, so I called ahead to a favorite place for takeout so I could at least give her something she would like for lunch. Fighting both "in town" and highway traffic, I made good time. Isaac smelled the family sandwiches we like for lunch and ate two of them.

Our representative from Baylor Children's Our House came to talk with me. She told me we were approved for a week of inpatient from our insurance. In her words, "they approved it on the spot without paperwork." That, at least, has not been a burden we have to bear....yet.

Jackie met with work friends and we were able to get her out of the room for awhile for a break. I stayed in the room with the sitter for most of it, then joined her when Isaac seemed to calm down a little.

PT worked with him. They have documented that his muse is soccer, so they were having him "head" and "chest" the beach ball as if he was playing soccer with them. They were impressed with his movements.

One of the soccer team moms came by with a great present for Isaac. She gave him a soccer ball with all the signatures from the teammates on it, as well as a few comments from parents. He held on to that like it was gold! It was immediately a hit, and he continued to make sure nothing happened to it the rest of the day.

At one point, he and I were tossing the ball to one another. I held on to it a little too long, looking at the signatures. He got up, came over, and started reading the comments the team mom had made. He was saying the words correctly, although still a bit hard to understand. When he sat down I found another comment on the ball and showed it to him. This one was larger and clearer than the other, with just a few words. I asked, but he could not identify the words. Seems it only works when he is casually thinking about it, not on command.

Mom, and the sitter, decided 5 days without a good bath was enough. They corralled him into taking a shower and got him moving in the right direction. The puberty embarrassment hit him, and he yelled at them to leave him alone in the bathroom, with the door closed, and he would take a shower. (yeah, right, Dad to the rescue!) I moved into the bathroom, and within about 5 minutes we were taking our first shower since the accident, with a bit of help from dad. (We closed the door and kept the ladies outside) That accomplished, we brushed our hair. Somehow, a fascination with the brush made us drag it pretty much everywhere the rest of the day. He never tried to use it properly again, but he didn't want to leave it behind.

A favorite aunt and uncle came to see him, on their way back from a daughter's graduation from ATC school in Denison. He really responded, and it was not a challenge to have 7 people in the room because he was familiar with all of them.

He became very belligerent when I had to leave to coordinate with the other two teenagers. We finally settled on his behavior being good would prompt me to get to the hospital early tomorrow morning. We still had to talk him down from the door, and mom said they redirected and talked him out of several attempts at it after I left.

All in all, this was not a good day for Isaac. A change of meds because of his aggression, and now we know that the aggression was most likely caused by a drug he was taking that was not needed, and has severe side effects. (although its primary function is spot on) It may take a week or more for the first drug to get out of his system, and some of the aggression we are seeing may also be just him fighting back.

He is getting better at standing without help, bending and standing back up, moving sideways, and getting up/sitting down. His dexterity is increasing, as witnessed by taking his medicine. We have reduced his night time medicine in the hopes it will allow him to wake up easier.

Tomorrow we overload him with new things. Pray for him to be patient and enjoy the new place.

9-7-11 (Wednesday)

(Red lettered phrases are copies of posts from FaceBook, archived here for those who do not have the opportunity to view it there)

Isaac slept all night 9-7am. Great job, bud! 

Praying today he has less frustration and agitation and is able to make some progress with his communication. Gross/fine motor skills are steadily improving.

Awesome job eating this morning by himself followed by working with Speech & labeling. Even worked on a puzzle. Then OT came in & we pitched fits & fought uncontrollably. They say this is normal, but it's so hard to watch...

Isaac's off to get the EEG test. We met with Baylor Our Children's House and he's transferring Friday morning and they are anticipating a 2 week stay.

Isaac feeding himself Jello. Thanks, Bubbie for making it'!!

The worst thing about being with a child like this is knowing that THEY know what the problem is, just not how to solve it, and being helpless to be able to fix it for them. The only reassuring thing is knowing others have gone through this same malady and returned relatively unscathed.

My uncle, Kenny, made some observations about how the brain stores information into the blank space. During rehabilitation, this information is very much a "real" dream that must be analyzed and determined to be false in order to free it from the memory chain.


I have seen things like this appearing in Isaac, but not enough to say for sure. I hope he will get to rehab where they can be on track for it while he goes through the therapies.

Isaac was pretty tired from his ordeal today. Much like a small child, his brain was overloaded by all the activity. (Actually, so was mine) He finally took a nap at 5 and slept for an hour or so before getting up.

He became distraught at the bed tonight, both from having an accident and from some unknown issue that set him off. It took several minutes to calm him down. I could see the frustration in his eyes when his sister and I left. It was painful for me.

9-6-11 (Tuesday)

(Red lettered phrases are copies of posts from FaceBook, archived here for those who do not have the opportunity to view it there) 

(Notes for post here. Will expand as I can) 

It is incredible, the amount of change that can happen in a day.

Dexterity is getting better, while we are showing dominance in the right hand more than the left. We had nachos for lunch. He took chips from my hand with cheese on them. Very good dexterity to accomplish that. He noticed a spoon with a piece of pear in a bowl, and I watched him carefully lift it from the bowl to his mouth successfully. He manipulated grapes, and then went back in bed

Buttbeak gets his name

Bathtime

Language begins -yelling better than talking

His mind's cup runneth over

Spoon of pears

The hidden grape

Yoda arrives

Legos

Video games and pool

Corn dogs, mac and cheese and fork.

Writing for the first time

Overstimulation

Recognizing that his name is spelled wrong on a card

Found our injury

9-5-11 (Monday)

(Red lettered phrases are copies of posts from FaceBook, archived here for those who do not have the opportunity to view it there) 

Isaac got his first wheelchair ride today. It was because he ate well, so the nurse was able to disconnect him from the IV. He still had his port and the pad on his right hand that stabilized the wrist.

They took him down the hallway to an area created by the Dallas Cowboys for children to enjoy while recuperating. It serves as a way to relax, a place where doctors are not allowed to enter, and a respite from the challenges they are currently living.

It is called the Aikman Zone, and is divided into two separate and distinct areas: one for smaller children with toys and puzzles, the other for older children with video games, pool, and computer access.

Isaac fixated on the pool table in the middle of the room. He was fascinated with how the balls roll. He remembered the game from us playing it, since that is our second most fun activity behind soccer.

We then went downstairs to see this incredible model train exhibit at the front entrance to the hospital. One end and middle are covered in tracks by man-made mountains, while the other end is a mock city of dallas. There is Snow White and the Seven Dwarves to Indians in a village to transformers and power rangers, It is an experience, but Isaac did not have the focus for it, so they took him next door to see the starry ceiling and the monster butterflies that hang from that ceiling. Very well orchestrated, and complete with shooting stars. 

They went outside in the sunshine to find the waterfall, but I stayed inside. My lack of trength was getting to me, so I sat to wait. I almost fell asleep and dropped my phone.

Then it was back up to the room and rest.

Day 4 - Walking!!!

(Notes for post here. Will expand as I can)

Today was spectacular!

I slept in the Family Waiting room upstairs near the ICU, in a convertible recliner that lays out all the way. (There are plenty of them up there) There was only room for one to sleep comfortably, if you can call it that.

Up and walking with PT,

Sitting in a chair / couch

Up and walking with mom

Up and walking with me + elevator + Lower Level

Day 3 - New digs and progression (Fri 9/2)

We decided to double up in the room on the "single" bed. Now we have done this before, but it was years ago and many pounds lighter. After getting up with him twice by crawling over my wife, I woke and told her to move to the back and let me take the edge.

She slept better, and I stayed up with him while trying to cat nap. The morning came, and she went to change. I took over the bed until noticing the stream of people was getting thicker and more frequent. Freshening up, I came back to explanations of the situation by the docs in charge.

"Not much to say, but the collar is off as of 10 minutes ago. Ate some ice chips and apple sauce."

They reviewed his situation again, noticing he was not happy with the collar, and that he could now sit up a little by himself. They removed the C collar, much to his and our relief. He was restless and irritated throughout the day. He began to get more control of his extremities, and he was reactive to a doctor who apologized profusely, but kept pinching his fingers and toes.

They finally had a room ready for him. We packed our treasure trove, and with several of us toting "stuff", we made our way to the new room. They brought him a special bed, with an attached tent that zipped from the outside. We found that the room has its own bathroom and shower, but only room for one to sleep, so Jackie took the rocking chair and let me have the couch/bed. In the early morning, she woke me and asked if I would change places with her. I couldn't sit very long in the rocking chair, so picked up my blanket and headed for the elevator. I snuck into the Family Waiting room, which was empty, and put back one of the chairs. I slept until Jackie texted me to come back down.

Day 2 - Signs of life (Thurs 9/1)

The night nurse, Simon, was as comforting as possible and spent time with me just talking. I believe this medical team has as much a calling from God as they do for their profession. They are simply outstanding, not just with me as a grieving parent, but with each other as a passionate team that works together for the betterment of their patients and not for their own self-gratification or paycheck. I cannot stress how well these people worked together to get us everything we needed, tell us everything we wanted to know, and speak to us on our level. (we actually have a minor amount of medical training)

Isaac began showing signs that he was coming back around. Time was inconsequential for me, so I have to rely on my texts (with a date and time) to know when each milestone was made.

Awesome news: Isaac opens eyes and tracks to sound! He's beginning to squeeze both hands and push with his feet! He could POSSIBLY come off the vent later today!!! God is sooooo GOOD, and you prayer warriors are awesome!!! Update: Isaac recognizes mom and dad. He should be coming off the vent today.

We know that there is life again where life stopped. Now we had to manage his confusion while we brought him back fully. Ventilators are a constant irritation to those who do not know how the operate. They have settings that have to be turned down SLOWLY while they monitor the response of the patient. I wish we had had this knowledge prior, and maybe we did, but it was still a constant thought of "when are they going to wean him off of the vent?"

We waited patiently while the staff changed, more people learned of his situation, and they poked and prodded to determine his status. Having worked in the medical field before, I was not surprised by the equipment or the procedures. They, however, were keenly aware that all this was overwhelming to both the parents and the patient. They took great strides to minimize the discomfort whenever possible.

Isaac was becoming aware of his surroundings, and the giant tube sticking in his throat, and he was not happy about it. He started responding to mom and dad, which was a comfort to us. The doctors said it was the goal to get his tube out that day.

The tube came out, and after a bit of calming down, he looked at me and asked, in a scratchy tone, "What is on my neck?" I told him it was a collar to help him keep still, and it would not come off until later that day. He appeared to roll his eyes, turned the other way and saw his grandmother leaning over him. He reached up and grabbed her sleeve, which turned into a great hug.

Neuro finally came, but didn't take the collar off. That put us another night in the N-ICU.